Hi, I recently had a gallbladder infection during neutropenia and it was scary and took hospitalization to resolve. The neutropenia was very deep (neutrophils = zero).
Before I restart obinutuzumab I'd like to understand what types of infections people have experienced during low neutrophil count. Thanks for any examples.
I'm able to stay home for protection against Covid, but I do go out occasionally to a store or a doctor, using precautions. But in the Fall/Winter there will also be colds and flu about. I also like gardening and often get nicked or an infected sliver. How serious under neutropenia?
Thanks - Paul
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I have not had neutropenia or CLL treatment, but am prone to finger wounds so I always wear gloves while tending flowers or doing kitchen work, as recommended by my doctor.
Two years ago I developed a bad finger infection along the nail bed... from using bare hands to wash organic vegetables in a sinkful of water... despite no visible wound.
Now I use disposable medical gloves inside vinyl kitchen gloves or cotton gardening gloves.
You will hear from the brilliant folks who can answer your direct question.
Most of my hospital stays since my CLL diagnosis have been due to skin infections. Take care to minimise your risk of breaking your skin by avoiding risky activities (e.g. gardening, specific physical activities). Wear gloves and other appropriate PPE, shower daily, check for any skin infections regularly e.g. when you shower and disinfect any cuts or scrapes immediately, (I keep Betadine at hand) and cover with a band aid. Wear protective shoes that breathe to reduce your risk of fungal infections.
Thanks for that, Neil. I have tonail fungus on most toes, but several doctors have said that's not a risk for systemic infection during CLL treatment with mAbs. I also get bouts of fungus on the skin of my feet. Do these raise red flags?
I've heard similar about tonail fungus, but from personal experience, I can share that skin fungal infections can be extremely hard to eradicate when you are neutropenic. Fungal infections can be hard to manage in healthy folk.
Oof. I'd better get a reading on this topic from a CLL specialist. I've seen Dr. Coutre at Stanford a few times, he me have an idea of the risk. This might rule out Omab + Vclax.
Asking Dr Coutre would be a good idea. The primary fungal risk factor with CLL is lung infections, in particular aspergillosis, so be careful to avoid mouldy areas.
Fungal infections is one problem I didn't have with Obinutuzumab and Venetoclax. I think it is more common with PI3K (e.g. Idelalisib) and BTKi inhibitors (Acalabrutinib, Ibrutinib and so on). See ncbi.nlm.nih.gov/pmc/articl... ; the data is still being gathered.
Neil thanks for mentioning risk of fungal infection, and for the link to the article on invasive fungal infections, it was a very worthwhile read.
I'm getting the impression that each therapy option carries a whole bunch of risks (evident enough from the lists of adverse effects), but we don't yet have the precision medicine tools to predict which therapy is best for a given individual (aside from the value of biomarkers, age, performance status and so on).
That brings up a question. Is there a protocol for evaluating risks that you've found useful and can recommend? One that would list the hierarchy of risks for each CLL therapy? I'm guessing this has not been done, given the difficulty of obtaining enough data and sorting through confounding factors, plus legal concerns.
Knowing more about the risks now, and having lived through some of the experienced some of their fallout, I'm less comfortable with oncologists saying 'here are the available treatments, they're all good, just choose one, and let me know if you have any questions'.
My experience. I had FCR to good effect. Ls of 0.0, Neuts of 0.3 often for 6 months. Now after 18 mths, 0.5 and 1.8 respectively.
I asked for my Immunoglobulins and CD4 T cells to be evaluated. Was declined. Told not worth it as nothing can be predicted from levels. Even normal Infection risk remains. Its to do with more than the numbers, its how the immune systems "talks" to itself.
My wife and family have together had 8 full on respiratory infections during my CLL and FCR. (Pre Covid) Including catching from each other... I have had nothing. 5yrs. Just taken normal precautions. I don't understand and my enquiries of top Haematologists have gained no more than a shrug!
I take nothing for granted. Sensible precautions. Like AussieNeil says, and I also use Betadine for skin breaches. Ensure not iodine allergic!!
So... discuss with your Haem Team. Learn the precautions as AussieNeil indicates above. Know what to do if you get infection. How to recognise infection, its more than getting a temperature!! and not to get too OCD and ensure you enjoy your life.
As for optimal treatment. That's a whole other thing. Tricky. Important. Cos we can't predict our idiosyncratic responses. It will depend, also, on many factors, CLL type, age, Co-morbidity and so on.
Jig, thanks for your response. Sage advice! And impressive that you didn't catch those bugs. I'll need to learn more about recognizing infections, too.
I have been neutropenic since I started FCR in January 2019. I was taken into hospital a year ago for 6 days because they were zero. I had to have Zarzio injections to resolve this. I am now a year post FCR and they have improved to just borderline. I was on Acyclovir and Cotimoxazole as a preventable measure. I also had the flu vaccination. I made sure that I didn't go near anyone with colds, flu or anything that might be contagious. Also avoid children who have been vaccinated. I was told to take my temperature every day and contact the helpline if it went above or below a certain number. It is a pain avoiding potentially dangerous situations (especially large social gatherings in the winter months) but worth it in the end as Neutropenia can be so dangerous. I hope that all goes well for you. X
Thanks for your guidance, it's so welcome. Did you say to stay away from children who have been vaccinated? Is that a typo, or is the issue that they may have been given live vaccines?
Wow, you've had a lot to deal with. Thanks for sharing your experience. My oncologist seems as concerned as I am about restarting obinutuzumab given that my neuts went to zero for days and with Covid the risk of infection is higher than ever. Seems like neuts can go low with any of the targeted therapies because of off-target/bystander effects, but I'll hope for the best with acalabrutinib, which is the therapy I've chosen to switch to.
I had Profound neutropenia for 8 months last year following a ramp up of venetoclax which had to be stopped because of haemolytic anaemia. I spent the 8 months in hospital and in that time i contracted a severe fugal lung infection, sepsis on 3 separate occasions, ecoli, and flu before my nutrophils finally kicked back in following 8 months of daily injections to stimulate them. My doctors thought I wouldn’t survive but I had other ideas. A year on and I’m doing ok and trying to improve my fitness so that i might be a good candidate for a bone marrow transplant in January if I keep up the good work. You don’t realise how important your nutrophils are until you don’t have any.
Now I spend my days avoiding people to avoid Covid.
Rose-white, your story is an inspiration and at the same time a salutary warning to keep up our defences when our neutrophils are low.
I admit to getting complacent, assuming that 5 months after finishing treatment with FCR I would be less vulnerable to infections. Not so: an unscheduled blood test showed Lymphs and Neuts are still well below 1. The fact that I haven't had a single infection for 7 months may be -paradoxically - down to the Covid19 outbreak coinciding with end of treatment. Extra hygiene precautions and self isolation have helped keep me out of the emergency ward.
To be fair most of my infections came from being in hospital for treatments.
All the bouts of sepsis came from having different treatments. I had sepsis first in 2017 while having FCR. Then the other 3 bouts came about while trying to get started on venetoclax and all happened in the hospital. I’m now on ibrutinib and am improving. I have even learned how to clean and flush my pic and do my own injections so I can stay away from the hospital environment as much as possible. My family are super on the ball to try and keep me safe.
Yes the staff and doctors were amazing And it was there’s and mine sheer determination that got me through. However they were desperately understaffed, and my family had to really kick up a fuss to get me my own room and bathroom facilities which I did get eventually.
Wow, I can't imagine how someone so vulnerable to infection could possibly be looked after in a communal ward. Well done to you.
When I was neutropenic and reported fever, on three separate treatment cycles, I was admitted to the"emergency floor" immediately, put in an isolation room (once after an hour's wait while the room was deep cleaned), and given lots of attention until discharge. Although during these stays the staff were excellent, it was clear they were really stretched at times. And that sums up the NHS: a great institution, greatly under-resourced.
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